New Midlife Mommy

So Much F&*&ing Ado About Nothing

J (the nurse) called yesterday morning, leaving me a voice mail.  Our doctor's appointment was canceled.  She said that when she faxed the doctor about our appointment, he said that we should talk with A, the lab manager.  So, apparently, this mandatory doctor's appointment wasn't even the doctor's idea.  We were then directed to call A today.

I was just dreading this call.  Honestly, I spent Monday evening looking for attorneys who specialize in infertility issues (and I am the least litigious person you would ever want to meet).  I fully expected that we would be suing the clinic.  DH and I were both really angry about the whole thing.  Nonetheless, we decided that we would be civil and listen to what A had to say.

As it turned out, A is a very nice, knowledgeable person.  She told us that the problem was the result of their forms, which she freely admitted needed to be changed.  (Well, duh.  I don't know why they haven't done it, since it is very important -- everyone's legal rights are shaped by these forms.)

There are three choices on the forms, which direct the clinic with regard to what we would want them to do with unused embryos -- donate them to another couple, destroy them, or donate them for research.  It doesn't say freeze first, though that's implied, because it is discussed in another part of the form.  She said that the form should really have another option -- one that states "we haven't decided yet."  That leaves things open, and she admitted that the clinic would require a special written instruction before they did anything anyway.  But, saying that you haven't decided yet leaves things open for the future.  It's OK for DH to be tested later on if we have embryos left that we want to donate.  The regulations allow for that.  So, we were told to cross out that section of the form, write in a sentence stating that we haven't decided yet, and to return the form to the clinic. 

So much drama, so little substance.  I think J probably overreacted.  And I like J.  She is very nice, and she's been very helpful to me.  I don't know if she knows how to take me, because I think she's old-fashioned.  I, on the other hand, have absolutely no problem challenging the doctor if I think he's wrong.  He actually was wrong on my ability to take the cycle medications and still maintain a breast feeding relationship. To his credit, when he was provided solid, scientific information, he did change his position.  I'm kind of disappointed that he hasn't changed his position on the mandatory three day rest after transfer, since I gave him somewhere around ten abstracts discussing research studies that concluded that this was a waste of time (one study found that extended rest had an adverse affect on pregnancy rates).  I could only obtain the abstracts, but he told me he'd read the studies, they appeared to be good, solid studies, and he said something to the effect of "I guess that it does really boil down to embryo quality and patient compliance with the required medication."  In addition, there aren't any other clinics that I found that required three days of rest, and I told him that as well.  But, he didn't change his protocol.  I'm sorry about that, and that's his prerogative, but I won't be wasting time on the couch.   

Somehow, I sense J silently disapproves of me sometimes because I will push back, though I always do it politely.  That's kind of sad.  I do think that patients should be in a collaborative relationship with their doctors.  Doctors are not gods.  They forget to ask things.  It's the patient's job to bring up issues.  And to ask questions.  And, if the doctor is not amenable to that, then it's time to find another doctor.

So, here we are.  We are still on track.  And my blood pressure is slowly coming down.  I am glad that it was a minor misunderstanding.  If they actually were that unaware of the regulations, it really would be time to go elsewhere. 

And Now They Tell Me?

I should have a category for stupid doctors.  Or stupid clinics.  Caution:  Long rant follows.

I have been going to my clinic since 2001, I think.  My file is at least 4" thick.  We have spent a fortune there, and my insurance company has as well.  We've been through Clomid, injections with intrauterine insemination, IVF with my eggs, IVF with donor eggs, and FET (frozen embryo transfer).  Years and years of crap.

I didn't learn until after one of my FETs last year that my clinic had broken away from the hospital that they'd previously been a part of.  I was aware that they'd changed their name, but my FETs were performed at the hospital, in the same place that my IVF has been performed (while they were still officially connected to the hospital).  Apparently, they have an arrangement with the hospital to use their labs and facilities.  I thought that everything would be OK despite the change, as it was the same doctors, same staff, same offices.  I thought that they knew what they were doing.

I thought wrong, I guess.  This whole very expensive cycle has really been quite awful.  They charge $1,555 to "supervise" a donor cycle (paid by us, of course).  Yet, apparently "supervision" didn't include calling my donor a week or so ago to find out why she hadn't called them to tell them that her period had started.  As it turned out, her period had started, and she started her pills, as she had been instructed.  No one bothered to follow up with her until I called to ask for an update.  It makes me wonder what would have happened if I hadn't called.  It certainly pushed everything back, as I was supposed to have an April transfer; now it is scheduled for the first week of May.

I was in the office on Friday for an artificial cycle day 3.  I know, I previously told you that I would have to come in on cycle day 2.  That changed after my regular nurse called me and gave me different instructions (different nurses, different instructions?  Idiots.).  Apparently, they didn't care if my period started or not -- they just wanted me to come in five days after my last birth control pill, which they told me to stop on Sunday.  Payment is due on cycle day 3 (or 2 or whenever they bring you in).  Last year, before we embarked on another donor cycle, I'd sent an e-mail regarding what the expected cost would be for a cycle.  Including the "supervision," it is around $8500.  So, they knew why I was coming in, and based on their own policies, I was supposed to pay them.

Do you think that they might have had an itemized bill for me?  Not a chance.  The receptionist pulled out some standard form that had all kinds of procedures on it, which totaled around $11,000.  I told her that there was no way I was going to pay for that, because it included things that I've never used.  For example, my doctor doesn't use ultrasound guided transfers, and I don't need assisted hatching.  The receptionist was rather lost, and finally the office manager came over, apologized, and suggested that I pay for just the cycle.  The cost went up a bit, because it was $8730. 

As further evidence of how effed up they are, several weeks ago, they also tried to schedule me in for a "sounding" (where they determine the curvature, if any, of your cervix -- kind of like a dry run before an embryo transfer to make sure that everything goes smoothly).  Only one sounding is necessary, and I had one before my first IVF.  Since then, I've had two FETs.  My cervix remains unchanged.  They also wanted to schedule an HSG (Hysterosalpingogram), ostensibly to look for fibroids.  I'd had one of these tests when I first started treatment, and it was negative.  I've had no problems that are indicative of fibroids, and I have annual gynecologic exams (the last one in December 2007).  There is a risk of infection from an HSG, so I challenged this.  They ended up telling me that I didn't need to do it.  Honestly, I think it's probably just a revenue generator for them.

It does get worse, much much worse.  One thing that I have been crystal clear about is that we do plan to donate our unused embryos, if any, to another couple.  I have expressed concern, over and over, about whether or not all the required testing would be done.  I've told my regular nurse, J, and I talked with my doctor about it last year (in October?) when I had to come in for an exam (which is a crock in and of itself, since as I said, I see a regular gynecologist, and everything has always been just ducky).  I was assured that everything was fine, fine, fine.  They did give us the regular paperwork to sign, but it was really silly.  The paperwork is outdated, for example, it talks about participating in a study and requires consent for this study and a commitment for follow up after delivery of any child.  They are not doing any studies.  They told us that we could cross out what was inaccurate.  (Something wrong with this picture?  Shouldn't their lawyers have updated their forms before they embarked on this new adventure?)

Anyway.  Part of the form requires that you choose one of three options with regard to what you want done with your embryos.  The first choice is donate to another couple.  The second choice is to donate them for research.  The third choice is to have them destroyed.  The nurse tried repeatedly to push us away from selecting "donate to another couple," because there would be a lot of "extra tests" involved.  I have consistently said that I didn't care, I want the tests done; we want nothing to stand in the way of being able to donate the embryos to another couple.  The reason that this is so important is that the FDA regulations have recently changed, and if you do things incorrectly, the embryos may not be used, or sometimes, they may not be donated to another couple.

My clinic had an FDA inspection a few weeks ago.  They passed all of the technical things, but the inspector was critical of the paperwork and some of the testing that was required.  They were told that they weren't asking for all that they needed from the husband. 

So, when I met with J on Friday, she told me that my husband would need to come in for some additional tests, and he needed to provide them with a medical questionnaire and proof from his doctor that he was healthy.  And he had to do it before the eggs were harvested from the donor.  OK, pain in the a$$, but OK.  They took my $8730, and we were on our way.

Later in the day on Friday, J called me with "bad news."  She told me that DH would also need to give a sperm sample.  OK, fine.  And the sample would need to be tested and frozen.  OK, fine, fine.  And then DH would have to undergo more testing in six months to make sure that he was still OK with regard to the testing.  OK, fine, fine, FINE.  And then she said that we couldn't go ahead with our cycle until the six months have passed.  And they are blaming the new FDA regulations.

WTF?  I mean, really, WTF?  We've got at least $20,000 put into this so far.  NO ONE there has been unclear about what we wanted.  We started discussing this about six months ago.  I wanted to go through the phone and kill the messenger.  I really was not very polite, I must say, especially as I reminded J that she knew damned well what we wanted.  J promised that someone "who understood the regulations" would be calling us on Saturday between 9:30 and 10:00.

As it turned out, J called on Saturday and got both of us.  Apparently, whoever was supposed to call us would not be calling us.  Instead, we have been summoned to see my doctor to discuss the matter.  And we can't see him until Tuesday.

Right now, I just want to kill someone (and not J -- they are putting her in a very bad spot, as she admittedly doesn't understand the legalities).  I've learned since then that the clinic is just plain WRONG about what the regulations require.  I talked on my computer with Daisy.  I talked on my computer with Night Light Christian Adoption (they have an embryo adoption program known as "Snowflakes").  My husband and I looked at the regulations.  The fact of the matter is that these people are just plain f*cking wrong about what the regulations require.  IF we were creating embryos from a donor egg and my husband's sperm and giving them away out of the kindness of our hearts to someone else, then my husband would have to have his sperm quarantined for six months before transfer.  But, since we are intimate, there are different rules that apply to him.  Only the egg donor has to go through the testing.  Once we are finished with the embryos, if there are any left, then my husband would need to go through testing, though none of the testing would involve a six month sperm quarantine.  The embryos would have to be labeled so that any recipient would understand that his testing wasn't performed at the time the embryos were created, however, the testing was performed at a later date and there are no communicable diseases.  Easy breezy.

J said something about all of this being caused by our choice on "the form."  I am afraid that if we select "destroy" or "donate for research" just to continue on, we will have no legal recourse if they "accidentally" do either of these things.  I just don't trust them anymore.  In the back of my mind, it has now become obvious to me that this is a group of doctors who wanted to keep all the money for themselves (as opposed to sharing with the hospital).  What they forgot was that there are people's lives, hopes, and dreams hanging in the balance.  The new regulations are not that hard to understand.  If there is a problem with their forms, whose problem is it anyway?  Mine?  Clearly, they know what we want, and they've known it from the beginning.  The regulations may have recently gone into effect (perhaps last June?), but I'm certain they knew they were coming.  There is always a comment period, and then another period of time before regulations actually become effective.  They knew.  They knew.

I have no idea what will happen at our Tuesday meeting.  I trust that they don't have the unmitigated gall to actually charge us for this appointment.  But somehow, I wouldn't put it past them.

I've Been Tagged

Anjali tagged me for a meme.  How flattering!  You've made my day.

Here are the rules:

1. Link back to the person who tagged you.
2. Post these rules on your blog.
3. Share six unimportant things about yourself.
4. Tag six random people at the end of your entry.

Wow.  Six unimportant things.  Mostly, since I live such a boring life, there are many unimportant things, unfortunately.  Hmmm.  How about:

1.  The little toe on my right foot crosses over the fourth toe.  When I was small, the doctor told my mother to tape it straight, so that we could "train" it to be straight.  It didn't work.  But, the doctor said as long as it didn't bother me, we shouldn't worry about it.  Fixing it would require surgery and three months of crutches.  It doesn't bother me, and it's kind of a family thing.  I have a cousin who had the same problem.  She was one of fifteen (!) kids, and it did start to bother her.  So they cut her toe off.  I guess they figured she had nine more toes and that she wouldn't miss a little one (her sister lost four fingers in a threshing machine when she was two).  Thank goodness I wasn't raised on the farm and was allowed to keep all my fingers and toes. 

2.  I use my cruise control.  Everywhere.  I absolutely cannot drive the speed limit.  I'm certain that I would have lost my license by now, if it weren't for this marvelous invention.  On the few occasions when I've had to rent a car, I absolutely freak the eff out if the car doesn't have it.

3.  I can take shorthand.  I don't even think they teach this stuff anymore.  I used it in my first job, which was as a secretary.  But really, I used it more during college.  I took all my notes in shorthand, and transcribing it into my computer helped drill the material into my brain.  Thank you, teacher-whose-name-I-can-no-longer-remember.  It is the gift that keeps on giving, and I still use it to take notes when I need to get something down verbatim.

4.  I learned to swim in the Kentucky river while on vacation with my family.  Sort of.  Well, enough to allow me to fake my way out of the beginner's class when we had to take swimming lessons in high school.

5.  I am absolutely addicted to HSN and QVC.  I always have them on in the background, when no one else is around (because my husband hates hates hates them).  I'm especially partial to the jewelry, and I have more pearls than I can possible wear in a lifetime (or so my husband says).  Although HSN?  Your jewelry really is looking lame lately.

6.  I have four sizes worth of clothes in my closet.  And also in my husband's closet, since there isn't any room for all this stuff.  I'm working my way back down again, but it's slow going.  My husband can't wait.  No, he doesn't notice the weight loss.  He would just like some closet space, please.

OK.  I tag:

Daisy

BrooklynGirl

Tanya

Moo

Jamie

Jennie

Gee Whiz, I'm Glad I Asked

Last Thursday, I decided to call my clinic for an update.  I was in the middle of my second batch of pills (with no break for Aunt Flo in between), and I was kind of wondering where we were.  I've told you before, the only time that we're guaranteed to hear anything from them is when there is a bill for something or other that comes due.

I was told that J, the nurse that I normally work with, was busy and probably wouldn't be able to call me that day.  OK, that's fine, I understand.  But then, I got a rushed call from another nurse at the end of the day (4:00 to be exact; they shut off their phones at 4:30).  Fortunately, they didn't call my cell phone this time, like they usually do.  I generally keep my cell off during the day, so I always miss the darn call and can't call back until the next day.

Anyway.  My call prompted a call to another clinic, where our donor is cycling.  To make a long story short, she started her pills too, but apparently, she didn't call them to tell them that she'd started taking them as they wanted her to.  I don't fault her -- this is her first donor cycle.  The woman has applied to medical school, for crying out loud, and she's completed an undergraduate degree in physiology.  So, I don't think compliance is a problem on her end.  Rather, I think that communication on their end is the issue.  You might wonder how I would draw that conclusion, given my own experience.  Ahem.

So, I'm on Lupron now.  And I took my last pill on Sunday.  We're waiting for the arrival of Aunt Flo, and I'm supposed to call on cycle day 1.  So that I can come into the clinic on cycle day 2.  That's rather odd in itself, because I've always come in on cycle day 3.  When I asked why there was a change (wondering if perhaps they'd kind of dropped the ball here), I was told that they want me to have as much time as possible on Estrace (the bane of my existence -- I'm sure I'll gain all 12 pounds back in short order).  Unfortunately, if I start my cycle after the clinic closes, I'm just supposed to show up the next morning and wait until they can fit me in for blood work and an ultrasound.  It's a blessing to have a job that I can call into and say that I have to take care of something unexpectedly and will be in later.

Obviously, nothing is written in stone right now, but we are looking at a transfer sometime between 5/2 and 5/6.  And, since the donor is so very young (26), as opposed to our first donor, who was 31, we have decided that we are just going to transfer one embryo.  I know, it seems like an awful lot of time, risk, and expense for just one embryo, but we are deathly afraid of multiples.  I know that people who have more than one feel they are doubly or triply blessed after the baby years are over, but I can't even wrap my mind around that.  And neither can DH. 

And hey, it worked for Julie. 

Still A Seahorse (And Other News)

DD has really enjoyed her swimming lessons.  She (uncharacteristically) doesn't moan, whine, or complain about going.  But, we have noticed that she's not as advanced as most of the other kids (the class has ranged from 4-6 kids on any given Saturday, most of whom seem just a bit older than her), though I get the feeling that these other kids have been learning for awhile.  DD is new to all of this stuff. 

Happily, we also noticed that there is at least one other child in the world who whines more than DD.  Last Saturday, her dad finally had enough.  Both her parents come to lessons.  They have a nine month old, and her daddy paddles around the pool with her during her swimming lesson.  He's around, and he's already wet, so he helps his older child out when she needs it.  But last Saturday, she was so obnoxious that she wouldn't do or try anything without daddy helping and without a lot of crying.  So, dad finally took her out of the pool, dried her off, got her dressed, and they went home (kudos, dad!  That's the only way they learn.)  But I digress.

We received DD's "report card" last Saturday.  She met most of the goals, but there were some things that she just hasn't been able to do.  For example, she is afraid to put her face into the water and blow bubbles.  So, they suggested that if we wish to continue, we should sign her up to be a "Seahorse" again.

You know, I honestly don't care.  I don't see it as a failure, and we are not in some sort of competition.  But I have to say, I really like DD's outlook on this whole thing.  Her approach?  "Mommy, I get to be a Seahorse again!  Yeah!"  So, yeah.  I salute her.  The only disappointment that I have is really selfish -- had she moved on to the next class, we could sleep in a half hour later!  Ah well.  Someday.

Moving on.  DH and I had two date nights last week.  Go us.  They had a parents night out at her school on Thursday, which I didn't pay attention to until the last minute, but they let us sign up anyway.  Honestly, there were only about five kids signed up.  I don't quite get that -- a night out?  With my husband?  At a restaurant?  Without paper place mats?  Sign me up!  I don't quite understand the other parents, though the fact that they do these on a work night makes them not quite as fun as they could be on a Friday, but I understand that it is hard to get people willing to watch the kids.  And, this Saturday, DD's godmother watched DD while we went out to dinner again, though that was preplanned.  Unfortunately, we had to cut that short, because we are trying to finalize our estate plan.  DD's godmother is her alternate guardian, and holds my health care power of attorney (after DH, of course).  So, we ended the evening talking about yucky adult stuff.

I would really love to give you some news about our donor cycle, but there isn't much.  We have paid the broker's fee ($1,000), the donor's fee ($4,000), and fees for many of the donor's lab tests, but they don't really keep us up to date.  I haven't even started Lupron yet, though I was supposed to start on 3/25.  Apparently, the donor (who normally has a 28 day cycle), had a late visit from Aunt Flo this month.  Go figure.  So, I was told to start a new pack of pills (active pills), without taking the inactive pills for a week.  So, I haven't seen Aunt Flo yet, but hopefully, the donor has.  We're still waiting for some news.  I should call the clinic and just ask, but it is difficult to make those calls at work, during the clinic's regular hours.  I've mentioned before that there is no audio privacy at work.  We are supposed to be moving to a new place soon, so I hope that changes.  I do miss having walls that go up to the ceiling.

My diet is going slowly, but it's going.  I've lost 12 pounds so far, at least as of the last time I weighed myself.  I'm not obsessive about it, and I cheat a lot.  I don't follow the Nutrisystem program at all on the weekends.  But, at least the scale is going in the right direction, and my clothes are getting loose.  So far, so good.

Last, but not least, we've been introduced to an uninvited guest in our home.  A couple of weeks ago, after DD had gone to bed, one of the cats came rushing into the den.  The next thing we heard was "squeak!  squeak!  squeak!"  Yes, you guessed correctly.  It was a f*cking mouse.  A mouse.  In my house!!!  The cat had it in her mouth, but she lost it.  It got away because she was doing what cats do -- catching it and letting it go.

You know, at first I was all "oh, let's catch it humanely and let it go."  And then I read about all the really bad things that you can catch from mice, for example, hanta virus.  After I read that, I changed my tune and bought some traps.  Quick and painless.  Oddly, we haven't seen any mouse droppings, and we haven't seen the mouse again either.  So, lazy people that we are, we haven't put out the traps.  I also bought a spray bottle and some bleach, because you are not even supposed to touch mouse droppings without spraying them with a bleach solution and letting it sit for five minutes (I did a lot of research after seeing that darned thing).  Hopefully, the cats, the mouse, and any of her friends have come to an understanding -- with the understanding being that they need to move somewhere else.

And, that's all the news.  That's fit to print, anyway.